mets to lung
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Parakeets,
Sorry about your diagnosis but I'm glad you have found this forum.
I've dealt with pleural effusions for 2-3 years. Started off a small amount. Did thoracentesis. Grew to 2 liters. Had a Pleurx inserted and drained at home. The fluid did not go down so had a Pleurodesis procedure that successfully has kept me dry except for a few loculated pockets of fluid that I don't notice. After you have a pleurodesis procedure you can't fly for at least 8 weeks. Since then I try to avoid flying but haven't had any problems when I have. Honestly, I haven't even noticed the air pressure difference when I'm in the air. I do take an Ativan because I'm fearful of having a panic attack.
I'm certain you will feel much better once you start a treatment and Ibrance is a fantastic drug. We always say, "Don't ask Dr. Google". When I googled "breast cancer brain mets" when I was first diagnosed metastatic it said "11 months". I'm still alive more than 7.5 years later.
Hugs, Susan
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Hi Parakeets,
Sorry you are finding yourself here. I can imagine how you must be feeling at your young age. I was originally diagnosed at 38 but then went almost 16 years until I was diagnosed as metastatic as a result of a malignant pleural effusion. I was also ready to buy my burial plot based on Dr. Google’s prognosis but he was wrong! My MO made it clear he expected me to do well for quite some time and now I am coming up to five years metastatic.
I had quite a bit of fluid by the time I was diagnosed and had a small thoracentesis at the time they took fluid for a biopsy. It didn’t last and, after a second thoracentesis we decided to have a PleurX Catheter inserted. That was the ticket to resolving the issue. Home care came twice a week for about five or six months to drain the lung until it suddenly dried up. I now have loculated fluid that remains but it doesn’t cause any issues. My lung is somewhat damaged from the fluid/draining so I am careful about exposure to respiratory illnesses but I flew to Britain less than a year after the catheter was removed.
The pleural effusion is something that can be dealt with and a good treatment will help to knock it back. Hopefully you will start Ibrance soon and see quick results but don’t hesitate to reach out if you have any questions.
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Yikes. I was feeling sorry for myself a minute ago and then I read your posts, SusaninSF & ParakeetsRule. My pleural effusion produced a whopping 400 ccs of fluid during thoracentesis and, while the procedure is easy peasy, I cried like a baby for 4 days while my insides tried to fill up the 400 ccs of airspace left behind.
This year I've had some positive outcomes and some setbacks, then more positive, then more setbacks, so now I can feel it creeping up on me again, that sneaky pleural effusion. I've recently had my tumor markers fluctuate in the last three months and go up suddenly, then slowly go down a little, then creep back up significantly only to drop by half. In my brain, I'm imagining the mets during this time - growing and shrinking and growing and shrinking, and my pleural effusion going - ALLRIGHT! Now you've pissed me off!
I was told initially that it is loculated and could be completely asymtomatic, until it isn't, so I have a CT scheduled to check on the recent shenanigans, because I can defintely feel a disturbance it the force! My CRNP confirmed that my breathing is diminished on the right as compared to the left lung. Right now I just have some aching in my back, just below my right shoulder blade and shortness of breath during exertion. The good news being my tumor markers are the lowest they've been all year, so I'll suck it up. (or get it sucked out, as the case may be)
Liters? Really? I didn't even know that was possible.
Sadiesservant - Dr. Google must be stopped. I've had a few nighmares because of his misdiagnoses! I'm so lucky to have an awesome MO. He knows when I start a question with: "I'm not a doctor, but I play one on the internet, and I was wondering..........." he's going to have to talk me through whatever internet rabbit hole I just spiralled into!
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Thanks for the laugh GR4C1E. Yes... it can be liters of fluid. At one point I had more than 3 liters drained off of my right lung. That get's painful when it gets close to being empty. Ouch! I remember that well. Home care used to pull just under a liter off every 3-4 days. My body LOVES to make fluid!
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Yeah, I'm going to put that on my resume':
Super powers to include, but not limited to, creating abnormal cells and making fluid.
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SusaninSF, thank you! That is all helpful to know. My effusion seems to be pretty slow growing so that's good. It's been just over two weeks and it wasn't until today that it started feeling a little tight in there again. I'm going to have to reach out the pulmonologist soon to figure out what to do. The thoracentesis wasn't too bad but I don't know if it's something I can do repeatedly. I'm guessing not. What's the Pleurx like? In my head I'm imagining the drain tubes from after the mastectomy and I remember how much they suuuuuuuuucked.
Sadiesservant, Sadly we do not have home care here in the good old USA. At least not as a standard or routine thing. You either have to enlist family or hire a service. That's one reason I want to avoid a drainage tube! I live alone so I would either have to get a relative to come help drain it or go back to the hospital. (neither of which is terribly difficult if I'm able to to go this long in between drains, but still!) As for this diagnosis at my age, I think other people are more disturbed than me. I would obviously prefer to live to 100 like I planned (ha) but I don't have kids and I've been lucky enough to do about 5 people's worth of bucket list items already.
GR4C1E, your post made me laugh so hard. Nobody was more shocked than me. "What do you mean you pulled out a party-sized soda bottle's worth of fluid?! FROM WHERE?!" Hahaha. I'm 5'2" if you round up and weigh about 118 if I eat a lot of snacks. WHERE WAS ALL THIS FLUID?!
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Parakeets, I understand that many people drain the PleurX themselves so home care is not necessarily a requirement. That's just how they do things here. And the drain wasn't too bad (had to laugh at it suuuucking... they kind of all do... ha!). Showering was a bit of a pain as I needed to put a Mepore cover over it but I never had an infection.
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Parakeets,
Doing the drainage yourself isn't difficult. The part that I needed help with was putting on the dressing since my drain was on the side of my chest. It can be done if you keep a mirror nearby but will probably take some practice. The Pleurx was uncomfortable at first but I quickly got used to it. I was draining about 300cc.s every day so that was pretty inconvenient. I even had to travel while draining. A box of 10 of those drainage bottles cost my insurance company $3,400! So happy my Pleurodesis procedure was successful and I'm now healed up with no drain. I'm grateful that there was something I could do even if it wasn't easy.
Hugs, Susan
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Parakeets-I had home nursing visits approved by my insurance company for the drainage. I did that for about a month but found it inconvenient b/c I would only find out the night before when the nurse was coming. I had to persuade my pulmonologist that I was capable of doing the drainage myself by demonstrating it in his office. Once you get the hang of it, it isn't hard. The drain does not protrude much and is covered by a waterproof bandage so it's not that inconvenient. I couldn't swim or take deep baths but that was it. I was allowed to fly if I wanted but didn't feel like dragging all my equipment with me.
I imagine your pulmonologist will advise you on whether to get a pleurex catheter or whether you can get by with occasional thorocentesis procedures. I think it all depends on the volume of the fluid and how quickly it builds up.
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Hi all - it’s been a quiet few weeks for me which I’ll take as a good sign. I see my Docs again in early Jan to check on tumour in left lung bi had wedge resection earlier this year in right lung. Healed well bit also had small pleural effusion. We will see what 2022 brings. Everything was stable at last scans so I’ll take that into the new year.
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Well, enough fluid has built up again that the pulmonologist said it's better to go ahead and put in a Pleurx. Boo! So that's scheduled for Wednesday after my first Zometa infusion. I went about two weeks before the effusion built up enough to be annoying again, so at least I won't have to deal with it too often.
I thought I was starting treatment last week (Zometa and Faslodex) but when I got there they said whoever told me to come in shouldn't have. Great!! And I had no idea Zometa was an infusion, I thought they said it was a shot! And my oncologist was out on emergency leave and couldn't clear up all the confusion. Hopefully next week we'll be back on track, because the PET scan and brain MRI results will be in and hopefully so will my oncologist....
Are there any exercise restrictions with a Pleurx?
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Parakeets, I had no restrictions with the PleurX beyond no bathing. However, you will be sore for a few days and should wait until things heal before doing anything strenuous. It does sound like you won’t need to be drained too often. My lung filled up within days to the point that I could barely make it to the end of my driveway without gasping for breath.
Sorry about the confusion. Hopefully you will be back on track soon
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Parakeets,
I agree with Sadieservant that you should take it easy the first few days and no swimming or bathing while it is in. I did daily yoga and twice-weekly dance class with the Pleurx.
Hugs, Susan
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Hi All, just to jump in on the Zometa chat. I was also scheduled for this but, since I have no other infusions and am trying to avoid the ‘chemo ward’ for as long as possible ( although I’m on Capecitabine), I made a bit of a fuss about it. They switched me to Denosumab which does the same job but is a sub cutaneous jab and has less side effects than Zometa…..it’s also at least twice as expensive. I’m about to ask them if I can do this myself at home instead of waiting up to a couple of hours in hospital!
I’ve been on that for about 8 months and my MO says it can be indefinite as long as working. My dentist is very up on all of this and is confident we can deal with any dental issues.
Never heard of a PleurX ….but having had 2 large pleural effusions and a pleurodesis in Jan, will be keeping an eye on that!
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Karen, I'm on denosumab and I made arrangements to do it at home but they normally don't because it doesn't come.in a prefilled syringe. It's a vial and you need a blunt needle to draw it up, then switch to the injection needle. Because I went to nursing school and my dd is an RN they let me do my own. I have a reel about it on my Instagram where I filmed her prep it and give it to me. I've done it myself too ..
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More lung fluid thoughts and questions!
I have a drain installation scheduled for tomorrow but I'm thinking about cancelling it. I watched the videos they told me to watch to prepare, and it was all talk about "going home for one last time" and "getting you back to doing the things you love" and other similar ominous sentiments. But that doesn't apply to me at all. My effusion is nowhere near bad enough to make the idea of getting a drain seem like a relief. It just seems horrible and having it will make me feel horrible. And I currently feel pretty good considering the overall situation so why mess that up?I've now gone three weeks since it was drained and there hasn't been anything I can't do. Feeling it slosh if I bend over is annoying and some activities are a little more challenging, like going up multiple flights of stairs, and talking on the phone while walking my dog up a slope (ha) but that's pretty much it. And I actually feel a lot better this week than I did last week when I talked to the pulmonologist. I'm getting Zometa and seeing my oncologist before the drain procedure, so I'm going to ask what she thinks because she was out on emergency leave when I went back to the pulmonary office last week. Fingers crossed I can also start Ibrance and Faslodex tomorrow. I've never been so excited for medicine before!!!!!
Do effusions grow and shrink on their own without treatment? Is that why I'm feeling better this week? Or are my heart/lungs adjusting to the reduced lung size? Is long term damage an issue if my lung doesn't get enough space for a long time? Can your pleural cavity pop a leak if it gets too full? (I would have asked the doctor when he called today but that was before I watched the videos and spiraled downward)
Am I being totally irrational for wanting to cancel this?
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Parakeets, I'm not sure what the video showed that has you rattled. As I indicated, I had the PleurX catheter when I was first diagnosed, from January 2017 to about July 2017. I'm now coming up to five years metastatic. The surgeon did indicate that they typically see people who are end stage with this issue but he noted that clearly wasn't the case with me. I had no discomfort at all from the catheter and it was hugely beneficial in allowing me to live normally but then, I had a lot of fluid making it hard to function at its worst. There are several others on this site who also had a PleurX many years ago and are continuing to do well.
There are no black and white answers to your questions as cancer can do funny things and is very individual. However, typically the fluid will continue to accumulate in the absence of treatment, making breathing more difficult. It's unlikely to decrease without an effective therapy and/or drainage. Yes, the long term accumulation of fluid can damage the lung(s). I have a permanently reduced lung volume in my right lung which shows up on the CT as a result of the effusion (about 2/3 functional). It doesn't bother me but I wouldn't want to lose any additional capacity there.
In your case it may not be critical for you to have this procedure as it sounds like your fluid accumulation so far has been relatively minor. However, I would encourage you to discuss it with your MO before canceling. It's also important to understand that Ibrance will take about three months before you see results. Hormone based treatments are very effective but slower.
Good luck with your decision.
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I think it was mostly that the videos reminded me of what it was like having a drain attached to my body! That was absolutely the worst part of the entire cancer experience. I'd rather do chemo again or have another mastectomy than have a drain for an undetermined and possibly months-long time frame.
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Parakeets,
I am one of those end stage people as you can see from my profile. I went for about a year with a small amount of fluid but then, when my tumors progressed, so did the fluid. I was experiencing shortness of breath so my MO sent me to the breathing clinic. They are so focused on COVID there they neglected to see my large pleural effusion. They only discovered that I had 2 liters of fluid when the surgery performed a liver biopsy a few days later. I'm tiny and weigh 102-3 pounds. They had to remove it in two tries because the drainage of so much fluid was very painful.
Like many of our decisions, it's hard to know the right path when there's a fork in the road. At the same time, it's great to have options. Though the pleurodesis procedure was very hard, it worked after the Pleurx was unsuccessful in drying me up.
I think it's good that you are asking questions. We are all different. When I had my first Thoracentesis, I declined to have the drain put in. Later, when the fluid became worse, the inconvenience of having a drain far outweighed my need to breathe better.
Hugs, Susan
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Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC
To register, go HERE.
After registering, you will receive a confirmation email containing information about joining the meeting.
Hope to see you there.
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Well, I opted out of the drain for now. At the last second I called and asked to switch. Different doctors did the thoracentesis this time and they were of the opinion that if getting poked through the ribs every few weeks didn't bother me, they didn't see much of a problem with doing it. It's also not painful for me, lots of soreness after but not too bad. Before the thoracentesis, I got my first round of treatment drugs: Zometa, Zolodex, and Faslodex (I actually called to cancel the drain during the Zometa infusion!)
My treatment plan has changed though: my oncologist wants me to do Piqray instead of Ibrance. I'm holding off on that until Monday because I'm going to a wedding on Sunday! I love weddings, especially this kind that will have pizza for the reception dinner and cupcakes instead of cake. Ha!
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Parakeets,
I only just now read that you were diagnosed metastatic last month. So you are looking for your first line of treatment. If I were you, I'd take Ibrance first. Piqray really raises your blood sugar and many people who take it end up also having to take insulin. The diabetic symptoms go away once you are off of it but it's not an easy drug to take. Ibrance is generally well tolerated.
Sorry if you already know this but Zometa and Zoladex are not cancer treatments. Zometa is for bone strength and Zoladex puts you into menopause. Most ER+, pre-menopausal women are on both of those regardless of cancer treatment. Faslodex is an estrogen receptor downgrader that is usually given in combination with a targeted therapy like Ibrance. Not sure why your MO would give you Faslodex as a monotherapy.
I'm not a doctor, just speaking as someone who has been on all of those drugs. Those first couple of months after diagnosis are the hardest. I'm glad you have found this board.
Hugs, Susan
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John Mayer was right. My body IS a wonderland! Because I sure as hell have been WONDERING what is going on.
Turns out, I blamed my pesky pleural effusion, (but in my defense, she really does have an attitude problem) for the pain in my chest and back, when it turns out, after my CT and two more rib fractures later, SURPRISE! bone mets. But, really not surprising at all, according to my MO who told me to take calcium and added Xgeva to my next Taxotere cycle.
Apparently, Snap, Crackle and Pop have set up residence in ribs # 7, 9, 10 and 12. Basically, sneezing is now considered a high risk activity.
I WAS going to follow that last sentence with "give me a break already" but technically I have FOUR and that just sounds greedy.
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GR4C1E, oh man, bummer about the bone mets. Wth, stupid cancer. Is your oncologist happy to keep you on the same systemic tx for now? The xgeva doesn't really slow cancer growth from what my MO told me
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moth-
Yeah, no change to treatment just yet. Just adding Xgeva for now, plus daily calcium supplements (500 mg twice a day).
My MO did not say that the Xgeva would stop mets. He said he was prescribing it to strengthen the bone, if that makes sense?
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Oh yes, totally, that is the indication. I started it the moment I was dx'd with a bone met too. Mine was just one in T11. I had radiation treatment to the bone met to kill it.
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My cancer has spread to my ribs too as of my last scan. They upped the frequency of my Xgeva shots. I was doing them every six months, now every three. I wasn't told to be careful. I was already taking Calcium twice a day. I do cough pretty violently and do some crazy yoga poses. I see my MO tomorrow and will ask. I did cyberknife on my femur bone years ago and it worked very well. Now, with my lungs in such bad shape, they may not want to do radiation on my ribs.
I have read that Xgeva can help to prevent mets to the bone but won't reduce mets once they are already there.
Don't forget that you have to let your dentist know if you're on Xgeva. There is a risk of jaw necrosis following dental procedures.
Hugs, Susan
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SusaninSF - My MO prescribed Xgeva for each chemo cycle, so I believe I'm getting it once a month. He DID warn me of the risks of dental procedures and told me that I would need to stop Xgeva for a period of months before and after anything invasive. Luckily, so far, my teeth are behaving! He said cleanings or fillings were okay, but surgical procedures, like a tooth extraction, are not going to end well on while on Xgeva! Yikes.
Radiation has never been an option for me, at least according to my previous MO. He said radiation is recommended when there is a single target, but in my case, there are too many tumors in my lung. Now that I'm up to four rib fractures, I'm guessing radiation will not be an option there as well.
So, for now, today I have labs and he added a Vitamin D3 levels test. In two weeks I start my first Xgeva injection when I start my next Taxotere cycle.
Hey, did you know this? My MO told me to take 500 mg of calcium twice a day because the body can't absorb more than 500 mg of calcium at a time. Nobody ever told me that before. It's very confusing.
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GR41E,
Good info about the calcium. I take 900 mgs a day. My tablets are 300 mgs each so I take 2 in the morning and one at night. Sounds like I'm probably only absorbing 800 of that.
Thanks, Susan
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I successfully, from a fluid build-up perspective, completed my Pleurodesis procedure at the end of August. But almost four months later my shortness of breath is worse than ever. Just going up half a dozen has me gasping for air. I had expected that I would gradually get better and that, after three months, I would be doing pretty well. I have had some progression in my lungs but my left lung is pretty clear and my right is at about half capacity; enough, I think, to not be so short of breath. Anyone else undergo a Pleurodesis procedure? What was your experience?
Hugs, Susan
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